Anger, despair and a ray of hope for those living with Parkinson’s Disease

HE WAS racing down a corridor as per usual when he noticed that his left heel was clipping the ground. Intermittently.

Unbidden. Two days later, he observed that the heel on his left shoe was wearing down faster than its mate. Odd, but no more than odd.

Then, at a meeting where he was seated, elbow on table, he registered his hand trembling slightly. He moved. The tremor vanished. Putting on his socks one morning, he realised the second toe on one of his feet was shivering. All on its own. Peculiar. Funny, even. That was the year 2000.

The following year, he realised the timing of his foot on the clutch of the car was off, and that this glitch in co-ordination was matched by odd problems in his hands. He went to his GP, who referred him to a consultant. Who reported back to the GP. Who conveyed the diagnosis. He drove home, shell-shocked, the name of the disease — Parkinson’s — now stuck to his own name, Sean Cottrell.

He told his wife, Brid. And told nobody else for seven years. He was too busy going through the processes of bereavement: Shock, anger, bargaining, despair.

“Feeling sorry for myself and angry at the world. I couldn’t even bring myself to learn more about it. The contradictions were strange. I could run, no bother, but when I walked, I walked like the Hunchback of Notre Dame, dragging a leg. I couldn’t fasten the buttons on my shirt. My speech began to slur.”

Medication helped — and hindered.

Better daytime physical control was balanced by nocturnal sleeplessness.

As the symptoms worsened, he realised that, as director of the Irish Primary Principals’ Network, he would have to start telling people. That meant finding a quiet place and uninterrupted time. Not always easy.

Those who worked with him were saddened and sympathetic. One of his friends listened and then made a crack about Parkinson’s people spilling half their drink while people with Alzheimer’s can’t remember where they put their drink.

When he told that to other people, their mouths shrivelled in disapproval, but for Cottrell, the involuntary laugh it jolted out of him was better than the dread evoked by the kindly advice offered by other friends.

“Mind yourself,” they would say gently, and the kindly instruction had about it the whiff of expected death.

He told his two daughters in the car, because, since the two of them were in the back seat, it limited eye contact. His elder daughter listened to his explanation of why he had been in hospital for tests, and to the diagnosis and prognosis.

“Are you going to die?” was her only question.

Her father told her that the two girls were going to be stuck with him for a while and the conversation died. He has no doubt that they went directly to Google to find out more as soon as they got home.

As his limitations increased, he learned things about himself he had never known. Like that he hated being on his own, which was problematic, since the places he couldn’t go and things he couldn’t do enforced un-chosen solitude on him. For a self-confessed “people addict” that was tough.

“I also discovered a vanity I never knew I had,” he says. “I suppose everybody has it. I was increasingly aware of people looking at me. On one occasion, I’d arranged to meet my sister in a pub and two guys wouldn’t let me in because they thought I was drunk.”

In restaurants, he increasingly chose food he could eat with a fork, rather than have to cut.

“I remember a place with a set menu with meat as the main course. The guy sitting beside me was a really sound bloke from the Department of Education. The next thing the slice of beef landed on his lap. I was so embarrassed.”

Speaking in public at the IPPN annual conference became a carnival of horrors as the adrenalin of performance, mixed with Parkinson’s chemistry, proved an interesting cocktail of random physical possibilities. In 2006, he asked those present at the conference for a few minutes in advance of his speech to share a personal issue.

“I needed to do this. I knew enough about myself to know that if I could pull this off, I would be a free man. It was haunting me.”

A thousand people went still and listened as he told them that he had Parkinson’s, “but it hasn’t got me”, and smilingly told them to expect him to “shake, rattle and roll” during his speech. They swamped him afterwards with affection and support.

“I never felt so loved in my life.”

At home and in the office, he encountered unsentimental, unsought, smart and subtle help. But the symptoms were getting worse and worse. He had to stop giving radio interviews because his speech had disimproved so much.

Then his consultant in Cork, Brian Sweeney, mentioned a surgical intervention that had been around for about 10 years in the US and Britain.

Called deep brain stimulation, in simple terms, it means insertion of four electrodes into the brain on four sides where the production of dopamine should be happening, but, in Parkinson’s patients, isn’t.

Wires are threaded under the skin to a kind of pacemaker below the collar bone.

All the usual warnings applied, with bells on. Only about 15% of Parkinson’s sufferers are suitable for the surgery, which carries risks even for them — stroke; meningitis.

Sean thought about it for over a year. The catalyst for action was playing back the speech he had made at the previous year’s conference.

“It absolutely shocked me. I hardly recognised myself. I could not believe how visually distracting I was with my limbs writhing and my head moving from side to side. It really upset me. I actually cried. That night, I made the decision to go for the surgery if I was suited for it.”

He went to the centre of excellence in Bristol, where they told him he was one of the 15% suited for surgery. VHI covered it.

IN July of last year, he was operated on in Frenchay Hospital, Bristol. After surgery came the programming of the control mechanism. The expert nurse, Lucy Mooney, had at her disposal a large number of possible levels of electrical intervention. She tried five, none of which improved things for Sean, and one of which made him feel considerably worse. Then came the sixth.

“I could’ve danced a jig, I felt so good. I ran across the room and gave her a big hug and told her ‘Leave it there please’.”

Sean is still a man with a disease and consequent disabilities. He still takes medication. The volume of his speech is often low and its pace breathtakingly fast. But his face has resumed its old animation and his movement is easier and under more control.

“All the experts agree that there’s no known cure for Parkinson’s. I have off days. It’s not perfect,” he says, eager not to create unreal hopes in other people with the illness. “But I do feel like Lazarus coming back from the grave.”

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